Thinking About My Thinking-Cognitive Issues With Multiple Sclerosis Part Two
Thinking About My Thinking-Cognitive Changes With Multiple Sclerosis (MS)
Hi, and welcome back to Right Where I Am!
Thank you for returning to read more about my story with Mild to Moderate Cognitive Impairment as a result of Multiple Sclerosis.
Thank you also, for being a part of this maiden voyage of me putting my writing out into the world.
As you can likely imagine, being this vulnerable is a little emotional and sparks some self-consciousness. The writing also evokes more examples and things to recall and describe, and I can clearly struggle with being brief! As the girl from Mean Girls who “DOESN’T EVEN GO HERE,” said, “I just have a lot of feelings.”
So there you have it!
Don’t forget to comment (it’s at the top), and let me know that you were here!
Part Two
Still Figuring Out My Abilities and Adjusting
With everything up to this point, I could still perform my activities of daily living to some degree. I considered the fact that I could still drive fine enough, although some might disagree;) I could do some things around the house, but I did have some physical limitations from the fatigue and weakness that I was experiencing. I could usually handle getting the groceries, but I would get super wiped out and confused. It took so much of my energy at that time. I would eventually learn to do these things a bit differently due to the deficits.
I was still driving okay, but I would miss exits or turns. I would forget how to get to places that I had just been. At night I would get completely disoriented at times. I came to learn that some of this was because of my working memory being impaired. Even if I knew like two minutes beforehand that I needed to take an exit, or make a turn I would still forget.
When I got confused about directions or had any distraction, I couldn’t always make quick decisions when jumping back into the flow. Now I use GPS almost everywhere I go, and that makes it easier for me to get it back when I’ve lost it, which typically happens quite often. Maria (our 22 year old) is amazing at reminding me, “don’t forget to turn Mom.” I am so grateful for Maria, and for technology, and I can get anywhere and not get lost!
I found that it had gotten harder and harder to get myself dressed for the day in the mornings. This was different than the typical, “Hmm, what should I wear,” scenario. Like I just couldn’t figure it out, and likewise I have this thing where I don’t see items that are in plain sight. I scaled my closet way down in order to make it simpler for me to use.
Gray. Black. White.
Shirt. Pants. Sweater.
Sleeveless. Short Sleeves. Long Sleeves.
I recognize that some wonderfully organized humans do this already, but it felt amazing after the purge to pick things out so easily. I have learned to appreciate small-scale contentment! I am told that I need to wear more color, and I’m trying. I removed a lot of it nonetheless, because it’s just simpler for me.
If you know me, you can probably easily ascertain that I dress for function and comfort these days, and now you know that it’s also for ease on my brain. As I type right now I am outside on my little slice of peace and serenity, aka my balcony with its summer herb and flower garden. Summer is my all time favorite season by far. All of nature is alive, and beautiful, and thriving. I am certain that I will be sharing more about the seasons.
NEWS FLASH- I am wearing an excessively bright pair of orange terry cloth shorts, with a white 100% cotton t-shirt with a beautiful rainbow on it and an orangey collar. Heck yeah I am! There is this reasonably-priced store that sells lots of cotton tees, and currently has multiple colors of TERRY SHORTS y’all!! Terry cloth. The fabric of my childhood. Soft like a hug, and breathable in Minnesota summer! Anyway, color; huge step. I feel like I’m kinda crushing it on this particular summer day. Gotta celebrate the small wins am I right?
More learning
There is a table a bit further down in this article that talks about many of the exact ways in which I am affected, and I’m considering breaking that down like a visual checklist. It may not really interest anyone, but it might make me feel better putting it out there into the world with the rest of my feelings. This condition really does a number on my self confidence, and when I can point to something official and see my exact problem it is quite validating.
It really was such a confusing circumstance though, back when I was first figuring all of this out. I could do some things as I used to, and others I couldn’t seem to do without adjusting or adapting to. I would go back and forth thinking:
“I’m okay, wait-am I okay? I am SO not okay. I’m sort of okay. Wait-am I…what am I??”
I would also learn that the symptoms would come and go. At times it could be so quickly, and things would change by the day or even by the hour. It could be dependent on outside factors; did I overdo it? Is the heat getting to me? Or symptoms would just happen for seemingly no reason i.e. just a bad MS day. I could be fine in the morning, and by early afternoon I could be having big problems. This I discovered while I was still working, and I will share about that soon.
After lots of frustration, shame, tears, and differing kinds of therapy, I learned that I needed to recognize and acknowledge when I am spinning my wheels. If I’m trying my heart out to do a “thinking” thing, and I am feeling discouraged and defeated maybe I need to switch to a physical thing instead. Or vice versa. Or maybe I need to take a break, or assess whether or not my basic needs are met.
Have I eaten, and have I drank enough water? I learned to put eating on my to do list, because I would forget that a lot. Have I taken my prescribed meds? Have I gotten in any exercise or movement? Am I overdoing it?? Do I need to do some mindfulness to get centered? Having basic needs met is an important thing, especially in mental health. It’s a vulnerability thing. If you take care of your body you’re helping take care of your mind.
Think about being “hangry” for example. Your emotions are heightened because of your hunger, and depending on your current situation it could bring trouble. You might snap at someone and hurt their feelings. You could forget an important detail in a project, because you just can’t think straight from being so dang hungry. It can be a hole in your systems that increases your vulnerability. I personally don’t need to be going around more susceptible; i want to be as strong as I can emotionally and cognitively.
In Occupational Therapy (OT) my therapist and I tried different formats of planning out my days in order to be most effective and keep my self confidence and my stability. After every few tasks, particularly bigger ones she would have me add things in. 10am coffee. 10:30am grocery shopping. 11:30am rest. 12pm water plants. 12:15pm eat. This helped reduce the guilt about resting, when there are so many other things on my to do list. We just made it into a task, and that helped me see that it was fair and allowable. Likewise, this helped me manage my time, and not get sucked into particular things for too long. Ahh, Pinterest.
I have since had a second round of Neuropsychological testing, and my cognitive functions have continued to decline. Aw nuts. That was a couple of years ago from the time I write now. I have good days and bad days. Some days aren’t too bad, and some are really discouraging. This is why I am grateful for each day and really try to find the joy inside of myself. That way no matter what I’m doing I can find happiness, and I don’t have to wait for it to happen or come to me. I can be it in any given moment. Sometimes it is easier said than done.
The Particularly Tough Days
One of the tougher things from my perspective is that people don’t realize how much mental gymnastics are happening inside of my head most of the time. Even my closest people. Maybe they do-I’m not sure. I know on the days that I share that it’s a tough day they know, but on those days it’s already probably obvious I surmise. It can simply get kind of lonely in my head too because of all of this work. It is a roller coaster of too many thoughts to possibly handle processing, and then the coin flips and I can barely figure out one thought at all.
Then, think about having ADHD and anxiety both inside a noggin. Tons of people have this, as the two can go hand in hand. I can empathize so much. For me, the ADHD is constantly pulling away my focus. Then, I am anxious right? So that means I’m constantly thinking of the next task, or what about this or that, or him or her or them, or what was I supposed to do, or what do they think, or how is this or that person who I love really doing, or do we need ketchup, or am I doing enough, or how will I EVER make money again, or is my husband going to have another heart attack from working so hard because of me, or OH MY STARS what’s for dinner, or…or….or…
Now add the Cognitive Impairment, and my thoughts are a jumbled, garbled, scribble in black marker on white paper that is taped to a popsicle stick that I imagine holding in front of my face. Finding my 72,000 thoughts in a way that I can organize them is just so hard, because I know that they’re in there. If I didn’t know would it be easier? Then I would just be an empty head, and when I feel like that I get afraid. So then I go searching for the thoughts, and so on. Sigh. There are days where I realize after the fact that I have spent hours in one place trying to figure out what to make for dinner, or compiling a to do list. Then I’m so mentally exhausted that I’m also physically exhausted and I can’t do anything at all.
I guess what I’m getting at is that I’m still a mom, wife, daughter, sister, and friend, with mostly normal responsibilities and expectations of me. I feel selfish to say this out loud, but sometimes I do want someone to just notice or recognize (acknowledge maybe is the right word?) how hard it is every day to just hold a routine conversation without struggle. Maybe an unsolicited hug from my loves, or one of them to rub my back or my head, because odds are I am in actual pain. Physical touch goes a long way with me, and I know it’s hard as I live with humans who don’t like to be touched very much or at least not with me.
I know it may seem like things should be easy for me, because I don’t work currently. Maybe that’s just me assuming what goes through people’s minds, and I know that I can’t possibly conclude what people are thinking. I don’t know, these are just thoughts that wreak havoc in my brain because the insecurity this all brings.
That said, I am so grateful for those who love me and endure my highs and lows and in between. If you are in my close circle I love you ferociously and unconditionally, and I would fight an attacking wild animal for you. I know that you are doing the best you can with the hurdles in your life, in addition to helping pick up the slack because of mine.
Assessment of Cognition It is critical to assess for cognitive dysfunction, which occurs in >50% of patients with MS; multiple cognitive domains should be tested (Table).10 Some patients’ cognitive deficits are relatively mild, whereas others’ are severe enough to warrant diagnoses of neurocognitive disorders.
Validation
So much information, right? Getting this diagnosis was a little scary, and at the same time extremely affirming. I wasn’t totally losing it when I thought I was losing it!!
In addition, this table is notably validating for me personally, and I sometimes wish I could pass out a copy or something like it when meeting new people. A disclaimer if you will: “She’s friendly and fun, but here’s what to do if she stops working, and this is why she did…”
I have trouble with parts in every section of the table to some degree. If I think about it too much it’s kind of sad, but at the same time it just makes me feel good to know that it’s not just in my head. Well, it is in my head, but you know what I mean. Having some medical corroboration with what I was experiencing in my mind and body is somehow comforting to me. I think that may be because there’s a reason for all of it happening, it is easier to accept.
I think it also felt validating because it let me know that it wasn’t my fault. There were so many instances when I forgot something that my husband had told me, or had asked me to do. So many. There had been dozens of times when one of my kids said, “Mama, don’t you remember I told you.” These were times that they had told me weeks ago about something, and times when I had asked them the same question five times within an hour’s passing. “Mama, you don’t listen.”
Being a mom who loves nothing more than her kids, and having them tell me that I didn’t listen was devastating to me. This didn’t align with my values for what a good mom looked like. I am not that absent mom who doesn’t listen to her kids. I mean, I know there are times when moms are hanging on by a thread and cannot do one more damn thing. I know that there were times like that, but this was more than that. The innate mother’s guilt doubled at that point.
Conversations
When I’m talking to a new person or someone I don’t know very well, sometimes we’re wholly spouting along and then my brain just stops. I may lose my response, or our entire topic. Remember how my words are stuck somewhere deep down in my gut? I’m like a deer in the headlights now, and I start to feel panicky and hot. When I start sweating from the embarrassment I will perhaps overheat. (I assume that overheating with MS is something I’ll be sharing more about in the future with physical symptom topics).
When I overheat, my MS symptoms are exacerbated. Not just the cognitive ones, but now the physical ones too. Now I’m getting more confused. Not just about the topic or what I forgot to say, but I’m genuinely muddled, and disoriented. My decision making skills are out the window and they weren’t ever that great to begin with.
I might be fatigued and have bad balance, so I’m looking for something on which to lean or sit down on. Now insert me saying a weird thing, because that’s all I can think to say. I can’t think of a specific example, but typically it would be some super late comment on something that barely makes sense anymore. Then we might smile and nod, and walk away. Cringe.
There are times when I decide to make myself unapproachable on a particularly bad thinking day. It’s a decision I make often: a) Do I let people think that I’m mean or unfriendly, which is as a rule against my principles? b) Do I let them know that I’m friendly, and then suffer through the shame of not being able to hold what “should” be an easy conversation? Do I tell them that it’s a bad MS day? I worry about that too, because I don’t want to be the one “talking about her MS all of the time.” c) If it’s an event that I’m supposed to be attending do I stay home and pretty much hide?
I do realize that these scenarios are familiarly interchangeable with anxiety, depression, and other social and emotional disorders. In any of these cases it can be exhausting, embarrassing, defeating, and alienating. Since I have it as well, I can understand and empathize with those who have mental illness. I just have to say to anyone who relates to these types of scenarios and also to myself-I see you, and I get it. In my opinion any choice you make that feels like the best option for you in that moment is the right one. We’re really all simply doing the best we can.
Never forget your good friend “Grace.” I learned about her in therapy naturally. Especially during the times when the work is particularly hard; Give yourself a little Grace. She’s always right there.
Acceptance Is Work
With a diagnosis like Mild to Moderate Cognitive Impairment, and my privilege of looking like your average, everyday, typical human it can be difficult. I say this carefully, as I realize that I am exceptionally lucky to have the ability that I do. I am challenged to do a lot of internal work on shame when meeting new people in that I have not always been this way. I am not the same as I was. I’m the same person, yet I am changed, and yeah, I maybe am a little different.
I have learned that the way things “should” be and the way that they are, are not always the same. Would you agree? So in my case for example is there any reason to cling to thoughts of how things “should” be? Here I am. I have this brain damage so to speak. Can I change it? No. If I continue to hold myself to the standard of ability that I had before all of this MS stuff, would that be a realistic goal?
I should cook dinner every night. I should be able to keep my family’s needs straight and remember what they tell me. I should be able to have a basic conversation any day of the week, and I should have been able to help out more at the kids’ school functions. I’m not working, so I should at least be able to keep the house clean and picked up, and have dinner on the table every night.
Is that setting me up for feeling good about myself? Unquestionably no, BUT it’s not that easy to give myself the wiggle room that I would give say, another person. This is why I will be forever working on what I expect from myself and trying to justify it; or not. Some days I can do ten things, and other days I can do zero. Some days three, and some days five.
I try not to judge myself on my productivity. That is kind of detrimental to me, as I’m a little convinced that many of us Americans are too impressed with productive capacity in people. I get that stuff has to get done, and some people are rock stars at doing that. At the same time there are other things of importance and substance. Other things that add value.
Did I organize the pantry today? No, but maybe I helped a friend through a really hard day. Did I cook dinner tonight with the new recipe that I was thinking of using? No, I couldn’t handle the steps of it today, but I got some gardening in, and there’s other food in the fridge. Did I do anything on my to do list today? No, but I rested because my mind and body were tired and that’s what I needed in order to make it through the rest of the week.
I don’t know, I mean I just don’t think it’s healthy to base so much on productivity all of the time. Of course I feel accomplished when I get a lot done, and I love crossing off my to do list. It’s so satisfying, but at the same time that’s not all there is to me. I guess that’s what I’m trying to say. There’s more to life than crossing off a list of to do’s, some of which aren’t terribly important in the grand scheme of things.
One day in therapy, I don’t know how, but Caitlin (the magician therapist) asked me if I tend to list off the tasks that I’ve completed on any given day to Mike and the family. I absolutely did. She asked me why I thought I did that. I thought about it, and told her that I was sure that it was guilt and justification for me not working outside of the house. I was trying to make sure that they knew that I was busy, and not just sitting around being lazy all day. I was trying to make sure they knew I was still of value.
That is something that I have heard other people with invisible illnesses share feelings about too. We sometimes worry that we won’t be believed when needing to rest, or that we will be perceived as lazy:( I suppose we are already insecure about our deficits, and then it branches out to self-judgement. If I’m being completely transparent I should let you know that I still do this listing thing pretty much every day. I haven’t been able to reign it in, and I don’t know maybe I just need a little validation. For the record, Caitlin reminded me that I didn’t have to do sound off my productivity every day. I never said I was perfect.
Thank you so much for coming back to read Part Two of my story about living with Cognitive Impairment.
Through this process I am learning how much goes into editing and arranging information! I will need to give myself a bit more time than I considered, given my varying days. As you may now understand I need to do a lot of checking and double checking, and that takes some time!
Part Three will be about career and employment mostly, and a look into how MS and Cognitive Impairment have affected my ability to work.
Thank you for caring to read about my story, and if you relate in any way let me know in the comments.
See you soon!
~Maya
